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24/11/2013

I personally think when someone becomes a carer there should be some kind of help offered to you automatically. But it's not and it can be difficult to know what help is out there and most of all where to find it.

I have been my husbands carer for nearly 3yrs now. Our doctor knew I was my husbands carer but at no point did she tell me about any help that is out there for me. I don't know if it was lack of her knowledge of such help or if she just couldn't be bothered.

It was back in May that I was given a leaflet for

I had briefly looked at their website before but was not sure if they would or could help me. I ended up emailing them and I got a response very quickly, they even told me who would be assigned my case. Within a few days she contacted me and within a few weeks she came to see. Well since meeting her she has helped me and #raspberrytalk with so much and
has helped us get in touch with other organisations and got both me and #raspberrytalk assessments done.

She referred me for some CBT and I had my 1st session this month. She has also helped with so many other things and most of all she's given me support.

Somewhere on the internet I found out about a mentoring programe/scheme for new carers (but can't remember where). It's done through an organisation called timebank.
Anyway, I signed up for it and my mentor is very good, full of advice and her husband has fibromyilgia. So she has an understanding of what I'm going through and what #raspberrytalk is going through too.

who I signed up with at the beginning of the year. There is a lot of support on there too. If you sign up with them you can use the forums on there, which is mainly other carers and it's amazing how supportive they all are.

I was even part of carers week 2013 and shared my story.
I only found out about them because of using the internet and I'm sure there are other carers that are not lucky enough to have the internet. So how are we carers meant to know about help that is out there?

Something needs to be done about this. So many carers struggle without the help they truly need. I myself have struggled without help or support. This is not good because it can and has effected my own well being.

When we went in on Tuesday 5th November the nurse
politely explained to @raspberrytalk that she had been told by the practice
manager that he was not eligible for the flu jab. WTF is almost the words I
said to the nurse. @raspberrytalk was bemused and asked why this was the case
and she replied that he doen’t have any neurological conditions or an immune
system problem!

He then had to explain to the nurse that he has ME and
Fibromyalgia, which are both Neurological
disorders… and we then discovered that neither of them, nor his arthritis
or seizures are listed as “active” problems on his file!

As far as me and @raspberrytalk are concerned he should be
eligible for the flu jab, but the nurse said that none of that information was
on his records and she then explained thateven if it was, the surgery do not recognised the fact that ME and Fibro
are neurological disorders. She also said that @raspberrytalk’s latest blood
tests showed that his immune system is currently normal, so he wouldn’t get the
jab because of that.

Well at this point I was very pissed off and so was
@raspberrytalk to say the least.

Anyway I had my jab done.

@raspberrytalk explained to the nurse that he was concerned
about the overall care he could expect to receive from the GP’s at the surgery
if they don’t consider ME as neurological (i.e. they think it’s all in the
mind).

I am also concerned about this as @raspberrytalk’s ESA renewal is
coming up very soon. As most of you will know it was a real battle for him to
get any kind of benefits.

If we don’t have the support of our GP and other health
professionals, what hope is there for us?

It feels like we are fighting a battle that we will never
win and it’s a battle we are fighting alone …………

We have been invited in by the surgery to “discuss our
concerns”(!) I will update you all on this.

Take Care of Each other

Carers Vent

If like @raspberrytalk you have ME or Fibro and been refused flu jab please contact me on @carersvent

UPDATE: 7th November 2013

spoke to our GP and apparently according to the records they received from our last surgery there is no record of @raspberrytalk being given a 100% confirmation that he has ME or Fibro.

Also the only active problem on his records is his mental health problems and nothing about his arthritis which is a active problem.

really not sure where we stand or what we can do any advice would be welcomed.